Coping with the Unpredictable Life of Caregiving

That is my excuse for running out. How did this happen? Why do I trust these systems that so often fail me?

I ask myself these questions as I toss and turn, sleepless in my bed. Finally, sometime after midnight, I speak aloud: This is not the time for problem-solving, Liz. This is the time for sleeping. Perhaps my brain needed the admonishment, because after I tell myself this I finally fall asleep.

Life today offers so many time- and labor-saving systems for family caregivers, and yet I never can feel fully confident any of these solutions will actually perform as advertised. Take the prescription situation, for example. I carefully set up Mom’s prescriptions to automatically refill so that I would not have to manually manage half-a-dozen refill dates each month. Since May this system has run like clockwork. After so many months, I reached a point where I finally trusted that the system would do the work for me.

But no.

Last night, as I was doling Mom’s pills out into the little condiment cups I use to dispense them, I realized I had only three tablets remaining of a medication she uses. This particular medication requires special handling because Mom prefers a non-standard flavor of these sublingual discs, and the pharmacy always has to order them in special. In other words, it’s doubtful they will be able to fill the order in a mere three days.

Feeling a minor panic arising in the pit of my stomach, I pick up my phone and call the pharmacy number. The recorded message asks me to enter my prescription number to check its status. I duly punch in the 12 digits and wait. The recorded voice tells me the system cannot locate this prescription number. I painstakingly enter the digits again. No dice.

The adrenaline has hit me full force now. The prescription does not exist, according to this robotic voice. The pharmacy is closed. There is no human being to talk to. I will have to wait until tomorrow to resolve this problem.

I say nothing about this to Mom as I deliver her nighttime doses to her. Because of the dementia, Mom already has trust issues. She constantly follows up with me regarding routine events: Are you going grocery shopping this week? (As if I would suddenly stop buying food and send us into starvation mode.) And she harbors vague suspicions that her caregivers and I are stealing things from her.

If I admitted I forgot to fill her prescription, it would give her more reasons not to trust me. And maybe those reasons are valid, since I obviously failed in this simple task.

It’s an ironic circle, I think to myself. Mom doesn’t trust me, and now I don’t trust the technology of auto-refill.

The next morning I call the pharmacy back. This time the automated system tells me I have a prescription due to be refilled. I punch the buttons to pull up that record. Lo and behold, it’s the medication I need. The prescription that did not exist 12 hours ago now has sprung back to life. Speaking quietly into the phone to avoid being overheard, I respond to the various prompts: yes, no, yes, confirm. Voila! Apparently I can pick up the medication tomorrow.

Caregiving frequently feels like such a Kafka-esque environment. Things I take for granted as forming a solid part of my reality suddenly shift for no reason and leave a void. The prescription disappeared but then reappeared. The dental appointment I made for one date has mysteriously been moved to another date when the office calls to confirm it. The medical bill I paid on Mom’s behalf suddenly turns into an angry past-due notice.

Sometimes people ask me what would improve my life as a family caregiver, and today I would answer: some certainty about the state of my world. But the world often seems to say this is an unreasonable request. The rug under my feet is always moving, sometimes being pulled slowly, an inch at a time, and other times being yanked forcefully. I guess all I can learn to do is balance.